An ambassador for the cure

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WASHINGTON University High freshman Jake Kaufman looked around the cramped congressional hearing room when it was announced that the “best-dressed man in the room” would speak next.

Then Kaufman realized that the moderator was speaking about him, the one fellow on the panel dressed to the nines – suit, blue bow tie with white polka dots, socks decorated with hot dogs.

Kaufman sat up a bit straighter and on Wednesday told congressional staffers and health workers in the audience about his traumatic experience four years earlier with a drug-resistant form of tuberculosis, sharing observations that his University High friends in Irvine didn't know about.

“I wouldn't want anyone else to have that experience,” Kaufman said of what he went through. He told of how he began treatment for latent TB in 2009, but the drugs' extreme side effects meant he couldn't finish his course of treatment. Now the disease could come back at any time.

“There really needs to be medicine for children and better medicine for adults,” Kaufman said.

The 15-year-old allowed he was missing school in an effort to persuade Congress to approve more funding for TB research in hopes that drugs could be created for children with multidrug-resistant TB, a gaping hole in available treatments.

Kaufman wasn't alone in his quest, however. His mother, Caryn, just as impassioned, also spoke during the Tuesday and Wednesday panels.

“I was shocked,” his mother said, “to know that there's no medication for kids.”

INFECTION

Kaufman was exposed to active TB in 2009 when a teacher at Anneliese's School in Laguna Beach contracted the disease. She thought she had a bad cold, sought medical treatment, but continued to teach when she felt up to it. When she eventually received the diagnosis of multidrug-resistant tuberculosis, the Orange County Health Care Agency tested students at the school. After two tests, Kaufman was told he had a latent case of multidrug-resistant tuberculosis. About 1 in 10 patients with latent TB develops the active disease.

Dr. Felice Adler at the Children's Hospital of Orange County treated Kaufman. Adler, who accompanied the Kaufmans to Washington, explained that there are no approved pediatric treatments for multidrug-resistant tuberculosis and that Kaufman use the same medications as an adult. There was no set protocol for doctors to follow when treating Kaufman and his classmates.

Midway through his treatment, Kaufman began hearing voices and seeing strings of light. “It was like someone was yelling at me,” he said, “I was absolutely terrified.”

His mother rushed her son to the hospital, where doctors explained that the hallucinations were caused by drugs Kaufman was taking to prevent tuberculosis. He stopped taking the drugs immediately.

Tuberculosis in O.C.

Treating multidrug-resistant tuberculosis is a challenge, said Mike Carson, Orange County program manager for TB control. The usual course of treatment doesn't work with multidrug-resistant tuberculosis, so doctors rely on what are called “second-line drugs.” These medications require a longer course of treatment and have rough side effects.

Orange County had 187 TB cases in 2013, down from 192 in 2012. There was an increase, though, in multidrug-resistant cases, from one to three. While those numbers may sound low, Adler said, Orange County generally has more tuberculosis cases than 39 states.

Experts attribute county TB statistics to a large immigrant population. TB is more common in foreign-born populations than in people born in the United States. In 2013, 91 percent of cases in Orange County were among people born outside the United States, particularly among the Vietnamese, Filipino, Mexican, Korean and Chinese communities, according to Orange County's Health Care Agency.

Once the agency has been notified of a TB case, workers begin a “contact investigation.” They reach out and test anyone at home or work who may have come into contact with the patient.

The county agency also has an outreach program in which nurses will deliver medication to patients, helping them stay on schedule with a sometimes confusing regimen involving multiple drugs taken at different times of the day.

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